Friday, December 31, 2010

What a year this has been. So much has happened...so much I dreamed of for Dakin. Visiting amazing places, acheiving amazing things. All in all, I can sum it up in a single sentence: in 2010 Dakin thrived. And I can't ask for more than that.

I hope you all have a blessed and wonderful New Year! And thank you all for your well wishes. I am now not sure if this is a cold or some kind of sinus issue, but he is doing better today, and I thank you!

Thursday, December 30, 2010

I do believe we are in the throes of our very first cold. Don't ask me how it snuck in...I have no idea. You would think the entire germ universe would know about me by now and run the other way when I approach...evidently not this one. Brave, he is.

Ah well. It was bound to happen sometime. I can't keep Dakin wrapped in a bubble forever.

Anyhoo, it's just a lot of lung secretions and dribbly nose and fever for now. Any well wishes or thoughts on our behalf to whatever part of the universe you worship or don't would be appreciated...I am really hoping to keep this out of his chest.

Tuesday, December 28, 2010

First off, we had a wonderful Christmas. Nice and quiet, just like I like it. Dakin got a lot of wonderful gifts: a pet puppy (the kind that looks like it's sleeping--it breathes even!) that Dakin named "Question Mark" and will deign to brush occasionally, some play-doh stuff, a rotating light lamp from his girlfriend in Utah, DVDs from his aunt, a mini globe, a carousel music box (he loves merry-go-rounds), beautiful pillowcases from his great-grandma, some neat projector flashlights, 2 cars and lots more. I think, though, the most exciting one is the one Nana got for him (and he doesn't even know what it is yet!!): tickets for us to see the Imagination Movers in concert, and to attend the meet-and-greet following the concert! That will be awesome...more to come on that.

Now for Volcano Nose. I don't think he's fighting off a cold because he hasn't had a fever, but boy howdy, the secretions have been non-stop. He's never been junky like this--even to his nose dripping. Of course, the nose dripping is a great source of amusement to him, and he has dubbed his snotty nose "volcano nose". He enjoys trying to make it erupt too--he laughs so hard when he blows his nose and gets snot out. Hilarious, right? Yeah.

Anyhoo, it was a wonderful weekend. We hope everyone had an equally wonderful one!!

Friday, December 24, 2010

(**notes: you might be wondering if Dakin is wearing what appears to be a tank top in the dead of winter...well, he is. It's his spinal jacket undershirt and it's really warm. :) Also, Big Jet is the bad-guy character on Little Einsteins and Dakin's newest obsession, in case you were wondering.**)

Just some random Christmas pics...here is Dakin 'helping' me make marshmallows for Christmas gifts: Powdered sugar on the head and nose...

And our yearly tradition, Santaland! This year we waited way. too. long. to go, and were thusly in a car line for TWO HOURS. Fortunately, the little one was in an exceptional mood the entire time and seemed to enjoy watching all the cars. We got him a 'glowy stick' from one of the roadside vendors and he just loved that. I think the part he loved best was making it turn off. We would hand it to him and he would tap it on the back of the seat in front of him to turn it off, at which point he would laugh like it was the funniest thing ever. One time it didn't turn off quickly enough, so he kept tapping it and (in frustration) finally said, "OK! Broken!" (because he wanted it to be 'broken'. Ha!) He also learned the expression 'bull honky!' from when a car cut in front of us. He repeated that quite happily for some time thereafter.

Thursday, December 16, 2010

Ok, not really. But it kinda looks like it. Don't you think? See that white thing around his chest? That, my friends, is a spinal jacket. It's purpose is to help straighten out Dakin's back and in general make things easier for him.

We were fitted for it a month ago--an experience I didn't write about, maybe because the whole thing was only slightly preferable to a stint in a gulag. Nightmarish, the fitting was.

Today wasn't much better--think maybe a root canal minus the drugs. The second we parked the car Dakin was saying, "No guy up! No guy up!!" (The orthotist had to stretch him out for the fitting, suspended over two stools--oh, it was horrible). He kept with that same theme the whole time we were in there--'no guy up' and 'no owie!'. Tears and gasping later, we got the jacket on and all of a sudden he was three inches taller. Amazing.

It will take some getting used to, but he only has to wear it when he's in his stander, lying down or in his old stroller. So yay. He rode all the way home in it and was happy as a clam.

Thursday, December 9, 2010

I have been meaning to write down some of the amazingly cute things Dakin has been doing, but I keep forgetting. No more! This is really a post more for me than anyone else, but someone might find these funny.

1. When Dakin is lying on his side, he can raise his leg in the air and leave it there pretty much indefinitely. He was playing with his markers on his side and a few minutes later I came to pick him up and there were thirteen markers up his pant leg. He just put them in the leg hole near his ankle. Silly thing.

2. With the aforementioned markers, he had them to play with before he went to sleep the other day. The room was darkened, I was on the computer and he was being quiet, so I wasn't watching him too intently. When the lights came on after his nap his entire face was green. He had managed to get one of the caps off, and, well...he looked like a black ops guy.

3. He has a few favorite phrases: "Over that way", "over here", and "broken" are among them. He tells me where things are and which way he wants to roll with 'over that way' and tells me which eye itches with 'over here'. He was drawing a truck the other day and left part of it off. I asked him where the rest of it was, and he looked at me and said, "broken."

4. He also loves to say "fix it" after telling me something is broken.

5. If something isn't in use, it's taking a nap. If I put down something he's looking at, he'll tell me it's taking a nap. He snuggled his hand up next to me the other day and it was, too, taking a nap.

6. I think it's adorable that he can tell me which Imagination Movers episode a song comes from within three seconds of the song starting.

7. He says, "goo me" after he burps.

8. He was hiding under something the other day and we asked him where he was. He said 'gone.' That's his other favorite new thing to say. If I am searching for something, it's always 'gone.'

Hm, I think that's it for now. Again, this post is more for me. But I hope you enjoyed it anyway.

Sunday, December 5, 2010

That's what Dakin calls Santa. Hilarious, right? Like the Hanta virus? Ok, maybe it's only me who thinks that's funny. Anyhoo...here's this year's Santa picture. You will note how thrilled our little hero is by all this. I was hoping it would go like last year's pic...but you know what they say about the best laid plans of mice and moms... We did get a better one where Dakin was in his chair, but I can't get it to upload. Boo Photobucket.

See our same sweet Santa? This man is so kind and gentle with Dakin, and remembers him every year. He loves seeing him, even if the feeling is (at least this year) not mutual (boy, you should have seen the tears!!).

And again, our wonderful friend T at the mall made us an early appointment, came in early so we could do this, let us Lysol the set (and Santa himself!!), and even got Santa a new pair of gloves right out of the box just for Dakin. I know I have said this time and again, but we are unspeakably grateful for these people. Three years in a row now they have bent over backwards for Dakin. And we can never repay them for it. We are so blessed to be put in contact with people who want to help Dakin. Truly, immeasurably blessed.

Thursday, December 2, 2010

Hi all! We have a seriously amazing announcement to make! My friend Lisa, who is also a SMARD mom, has been working with the Manton Center at the Children's Hospital in Boston. The Manton Center researches orphan diseases, and has agreed to actively solicit doctors to begin researching SMARD!! YAY!

The tiny but awesome SMARD community has come together to help this study happen. My plea to you, dear readers, is that if there are any other SMARD families out there, please contact me so we can get you involved in the study. The more, the better!

I personally want to thank Lisa and all her hard work. I can't believe how far we have come in the last two years since Dakin's diagnosis! When we began, there were next to no other families to commune with, little by way of information on SMARD, and no research we were aware of. Now we have (found out about, thanks, Victoria!!) genetic research going on, as well as the promise of active research, as well as a wonderful community. YAY!